The critical first days after a cancer diagnosis
Hearing your doctor use the “c” word will evoke a tempest of emotions, so many at once – denial, fear, sorrow, anger, etc….. If you spend too much time and energy wallowing in these emotions, you will lose valuable time, make poor choices, and jeopardize your health. If you’ve ever been involved in a rear-end collision, you know that immediately following the impact, you sit in shock for a few moments to process. “Did that just happen?!” But you don’t stay in the car and contemplate for very long. You get out and assess the damage, communicate with the other people involved, and you make a plan to get your vehicle back to a driveable state. Getting a scary diagnosis of cancer requires the same kind of immediate reaction.
Shock is not a strong enough word to describe how Oscar and I felt when I was first diagnosed with breast cancer in 2012. I have never smoked or drank alcohol. I’m not overweight, and I was moderately active. My family history is almost completely free of cancer, even several generations back. As a matter of fact, I felt so confident that I would never get cancer, I cancelled our AFLAC cancer policy – 6 months before my diagnosis. (Boy, have I lived to regret that!) Once we finally accepted that this was really happening, we knew we needed to do something, but we were completely lost as to what we should do next. We had no “How-To-Manual” for guiding us through the next steps so we bumbled along, searching the internet and finding frightening and sometimes useless information. Thankfully, friends, and friends of friends came to our rescue and offered us the benefit of their knowledge and experience.
This is a list, that is by no means comprehensive, of what we learned. Some of you have more experience than with either your own fight with illness or caring for someone else. Please share your own tips and experiences as well in the comments below. I truly hope that none of you will ever need this information, but cancer is not going away so it is unfortunate, but true, that you either will need it for yourself or someone you know now or in the future.
Get a second opinion.
I was uncomfortable with this because I am a Southern-raised gal, and I felt that I was being rude and ungrateful to ask my doctor to send my records to another doctor for a second opinion. I’m glad I got over that, because I did get a second (and third) opinion). My surgeon’s first recommendation was that I have a lumpectomy rather than a mastectomy because she believed that my cancer was small, contained, and in only one location. If I had taken that advice, I wouldn’t be writing this today. Instead, I insisted on a single mastectomy. The pathology after surgery revealed that my cancer was larger than first diagnosed, a more aggressive cancer than first diagnosed, and was located in two places, not just the one spot that she would have taken in a lumpectomy. If you were considering a new car purchase, you would probably research several dealerships to determine the best fit based on several factors – price, financing options, service, customer reviews, location, etc…. Your decision about managing your health is much more important than a car purchase. Take it seriously, and if your doctor is offended by your decision to get a second opinion, then it’s a good thing you’re getting a second opinion.
Talk to survivors and friends with medical degrees.
Survivors will give you the best advice for doctors, hospitals, and practical tips for preparing for and recovering from surgery and treatments. If you live in the Raleigh, North Carolina area, I recommend these doctors and hospitals. If you don’t live in Raleigh, move here right away. It’s a great place to live, and the medical care is exceptional!
- Dr. Sean Canale – Breast cancer surgeon – He has a sonogram machine right in his office to do an immediate scan. When I suspected that I had cancer the second time, I went to him because I knew I wouldn’t have to waste time scheduling a scan at another location and wait for them to forward to the results to him. He was also able to do a biopsy right in his office. Surgeons have a well-deserved reputation for arrogance. Dr. Canale does not. He’s a top-notch surgeon who came highly recommended, and he treated me and my family with compassion and respect. I chose Dr. Canale after I decided not to return to the first surgeon who had given what I considered bad advice the first time.
- Dr. Michael Spiritos – Medical Oncologist at Duke Raleigh Cancer Center – A friend and cancer survivor who is a nurse at Duke Raleigh recommended Dr. Mike, and I am so grateful. He carries his phone everyday and directly answers texts and emails from his patients at all hours. I never had to go through a nurse or a call center to get to him.
- Duke Raleigh Cancer Center – The facilities are comfortable, and the nurses are the best! I looked at another cancer center, but this one was the best fit for me. I received chemotherapy and radiation treatments here.
- Carol Johns – Lymphedema specialist – Carol is a physical therapist with Duke. She specializes in patients with lymphedema. She helped me get range of motion and strength back after surgery and radiation. She also pushed my insurance company to cover the expense for a tactile compression pump to treat my lymphedema (a $6K expense that was covered at 100%).
- Blue Ridge Surgery Center – I had two surgeries here. It’s a small outpatient surgery center right across from Rex Hospital. My surgeon, Dr. Canale, practices at both Rex and Blue Ridge, but this smaller facility is perfect for outpatient surgeries. These great people love their jobs, and they treated me like a valued customer. One attending nurse even encouraged me by sharing her own experiences as a cancer survivor.
- Dr. Rhett High – Raleigh Plastic Surgery – Plastic surgeon, perfectionist, miracle-worker, magician, etc… Nuff said. Any more would be too much information. I’ll tell you what I really love about this doctor if you ever need to know.
Keep your friends informed.
Choking out the “c” word again and again is emotionally draining. Ask someone to make calls for you. My husband did this for me in the first few days because I just could not bring myself to do it. I used CaringBridge, as a way keep friends and family updated. I put out the updates that I wanted people to know so I would not have to continually repeat the same news. I’ve heard of some people who have been surprised to learn that their friends believed that they had only days to live! CaringBridge cuts down on this kind of misinformation.
Start a notebook/folder.
Some of the information you will be given will be available online, however, you will be surprised how much paper you will need to organize. Start a binder and organize it chronologically. You may also want to put in tabs for Lab Reports, Explanation of Benefits, Procedure Reports, Diagnosis Information, etc… Include blank note paper to take notes when you talk to your doctor either by phone or in the office.
Have someone else take notes when the doctor comes to visit you in the hospital.
You won’t be alert enough to take notes or remember what she says, so appoint someone to do this for you. They can use their phones to take notes and send them to you via text or email. Include the date and the doctor’s name along with the notes.
Talk to your employer about taking time off.
Friendship Christian School, was very generous with me about time off, and my coworkers stretched themselves to cover my classes and responsibilities. However, when I needed to take off several months, I was glad for the short term disability insurance coverage that my employer provided. I was able to stay home and recuperate and avoid illness while still receiving a partial paycheck.
When I look back at our first few days and weeks of February 2012 and then again in September 2014, I remember how frightened we felt, but never once did we lose hope that our God would “Keep me as the apple of the eye, hide me under the shadow of thy wings,” Psalm 17:8. I am amazed at how God used people and orchestrated circumstances to guide us.
Coincidence did not direct us to the right doctors, hospitals, and decisions about my treatment. God did that. We learned the truth of this scripture: Psalm 32:8, “I will instruct thee and teach thee in the way which thou shalt go: I will guide thee with mine eye.”
What other helpful advice would you share with someone who just received a serious medical diagnosis? Please share in the comments below.